“Could I be faking dementia?” Excerpt from MEMORY’S LAST BREATH: FIELD NOTES ON MY DEMENTIA that I read at CityArt
Last Wednesday evening, I read from the second chapter of MEMORY’S LAST BREATH, in which I reflect on the genesis of my book that grew from journal entries to an essay to more essays to chapters. About three essays in, the discrepancy between my daily memory failures and my apparently retained writing ability generated the questions, “How come I can still write? Could I be faking dementia?” Thanks, Pamela Balluck, for the main photo.
Photos by Peter Saunders: Joel Long, long-time convenor of CityArt, introduces Gerda and the poet, Jennifer Tonge, with whom I shared the reading hour. Jennifer read first, from her poems in narrative style, i.e. stories in metered verse that create the voices of a narrator and characters as in narrative fiction.
Chapter II: Quantum Puff Adders and Fractional Memories
In the present—from the time my short-term memory started to fail—I frequently am bewildered about why, where, and who I am: What was the goal that had bounced me out of bed and sent me outside to stare at the garage door? What store am I in? Who is this person I call “I” who feels so lost in a world that, all of a sudden, seems to tilt from its axis?
My perplexity in the present also reaches back into the past. If, at the end of every day when we sit down with a glass of wine to watch a video while holding hands, Peter and I have the same argument about whether we have finished watching our previous night’s film (I swear we haven’t, whereas Peter is equally certain that we have; and he reminds me of the ending; and I concede that he was right), what truth value does my vivid, thirty-year-old memory of our seventeenth wedding anniversary merit? And yet, it plays like a video on my closed eylids: Peter at home with Newton; I in a motel room in Vernal, Utah, with my girfriends Kathy and Anne, chaperoning our elementary-school daughters on a trip to the state-level Olympics of the Mind competition, which, the next morning, they won. And what about the Technicolor veracity of sixty-year-ago scenes from my childhood about my life on the Steenekamp family farm in South Africa?
I was four years old in 1953 when we moved eight hundred miles northeast from Cape Town to the Transvaal, a region as different and as distant from my birth place as Chicago is from a farm in Kansas. My father, Boshoff—who had a Bachelor’s in engineering and had worked in the Railway’s refrigeration department for five years—was going to help my grandfather on the family tobacco farm. We—my parents, then three siblings, and I—would at first live with our grandparents in the Old House. Once the farm started yielding an income, my father would build a house on his portion and move our family there.
The new house into which we moved when I was seven years old was built on land that had been plowed and planted, but the veld around it was still wild. My siblings and explored our new surroundings with gusto, a matter facilitated by the merciful paucity of parental supervision in those days. Our exploits included the discovery of a cave in a rocky outcrop two miles from our house, into which we let ourselves down with ropes we carried from home, and where, after a disappointingly short drop, we came upon the bones of a jackal still bristling with a few patches of fur.
The shaba on the pap, or the gravy on the grits, of our adventures, though—if measured by the frequency of its retelling—must have been the events of a day when I was eleven years old and consciously enjoying the freedoms of home, since I was just about to go off to high school, which meant boarding school. My oldest brother, Klasie, then seven, and I were out in the veld together, about two hundred yards from home, test driving the stilts we had made that morning by nailing jam cans onto thick sticks of wood, when suddenly we spotted, protruding from a gap the size of a pencil box in a four-foot-tall pile of rocks, a bulge of snakeskin. We could see the gleam of black chevrons on a grayish brown background.
Klasie and I hopped from our stilts and ran home, yelling the whole time for our father and Ou Isak, a laborer who had passed from my grandfather’s employ to my father’s. Pa, we realized when we got back home, was out in the tobacco fields. Ou Izak, who was deaf, did not respond. Ma was home, though, and hurried back to the rock pile with us to have a look.
After verifying that the snake was real and, indeed, enormous, she told us to keep watching it, while she went back home to call my father’s older brother, Oom Koot, who had a gun. He eventually arrived, together with his wife, and identified the snake as a puff adder.
Among my siblings, I was the only one old enough to feel the hair on my arms rise at the mention of the snake’s species: when we still lived in the Old House, one of my grandfather’s laborers brought his toddler daughter to the house for help. She had been bitten by a puff adder the day before. Despite the sangoma’s muti, the traditional healer’s medicine, the little girl’s arm and hand were swollen beyond recognition. Her eyes were open, but she did not flick away the flies sucking the bubbled spit from the corners of her mouth. My grandfather drove her to the doctor, but she died before the doctor could even send her to the hospital in Brits that served the black population.
By the rock pile harboring our puff adder, oom Koot’s wife, Tannie Wientjie, took a peek at the snake through her fingers. “It would make a lovely handbag,” she said. By that time Pa and Ou Izak, armed with farm tools, had joined us. With all the bystanders clumped together on some wide flat rocks out of the bullet’s range, Oom Koot took his shot.
The instant the bullet penetrated the snake, its skin burst open and out came what seemed like hundreds of foot-long baby snakes that scambled down the rocks and onto the trampled grass around the pile. The ground was alive with sinuous, wriggly miniature puff adders. Mixed in with the living ones, pieces of those hit by the bullet were still curling and twisting. We were farm people used to killing animals, so most of us sprang into action. Everyone—except Tannie Wientjie, my mother (who was pregnant with the baby that would be my youngest brother Boshoff), and I (who had killed a few things before but had decided I didn’t like it, or was it the little girl with the balloon-like arm?)—everyone grabbed a stick, a large stone, or one of Ou Isak’s farming implements and started killing baby snakes. Those of the participants who had sticks flipped the baby snakes from the grass over to the flat rocks and those with stones, picks, or spades bashed or chopped them until they were dead. Over the killers’ laughs and squeals and yells and the gritty, percussive scrape of tools on rock, the nonparticipants shouted warnings to be careful, since even newborn puff adders are venomous enough to kill an adult human being.
When the snake slaughter at the rock pile was over, we lined up what was left of the mother as well as the dead baby snakes. The killing ground was littered with snake pieces. We laid them on the flat rock patch—end-to-end to approximate the length of a whole one. After the reconstruction, we counted thirty-eight babies. The mother made thirty-nine. No one possessed a camera. By the end of the day the snakes were no more. Ou Isak had taken the mother to the tobacco drying barns to roast and had burned the not-worth-eating babies, so neither skins nor skeletons survived.
The story, however, lives on and has now entered the lore of a fourth generation in our clan. My and my six siblings’ children claim that the number of snakes has multiplied every time they have heard the story told. However, we who were there stand by our count of thirty-nine, even if a handful of these were composites.
Photo by Pam Balluck
Now to a part of the chapter that consists of notes from my journal.
Dementia Field Notes
The part of my memory that is most affected by my dementia is the part of short-term memory known as working memory, or the ability to hold a small amount of information in my head while I manipulate it. This morning, I got dressed and picked earrings studded with pink diamanté to wear with my outfit. I used the mirror in our closet to put them on. After I had gone to the upstairs bathroom to put on makeup, I noticed that I had lost one of the earrings. I backtracked down the stairs and to the bedroom looking for it. It lay on the shelf by the mirror in the closet together with the winged nut that secures it behind the ear. My attention had drifted after I had put the first one on, and I left the second one behind. In the same way, when I take out the garbage in the midst of cooking dinner, I could a minute later be watering my new plants outside while the broccoli boils dry. I have changed from an efficient and goal-directed person to someone who drifts from task to task, sometimes striking a blank between deciding to fetch the milk for my coffee and reaching the fridge one step away. In situations like this, realizing that I can’t remember what I was up to, I stop in my tracks, wring my hands Lady Macbeth–like, and ask myself, “What am I trying to do?”
Now to a section of the chapter that consists of a science-style report titled, “Is It Possible for Dementia Patients Who Have Lost Their Independence in the Performance of So-called ADLs, or Activities of Daily Living, To Retain Deeply Engrained Knowledge Structures and/or Intellectual Skills?” Part I of my report examines the question, “What is memory and how does it relate to ‘truth’?”
Summary of a self-designed course in introductory neuroscience that I undertook while writing the book: “Memories are not formed and then pristinely maintained,” as neuroscientists used to think, but rather “formed and then rebuilt every time they’re accessed”: every time we think about the past “we are delicately transforming its cellular representation in the brain, changing its underlying neural circuitry.” So, a memory is changed every time it is remembered.
Part II: Enquiry into the truth of “The Tale of the Thirty-Nine Puff Adders”
(Summary) In an e-mail conversation with my 6 siblings, now in their fifties and sixties I asked for their versions of the puff adder story. Here is a flavor of our conversation from my book:
Carel, 6 years old. Sketch by my school friend Erna Schutte, now Buber-deVilliers Schutte, during a visit to our farm in about 1961.
I suspect that Gerda is conflating two snake episodes; fusing fractional memories into integral recollection—in this instance puff adder/makoppa fusion.
The reality, as Klasie and I concur, involves him, myself and I think Duard or Willie urinating on a pile of rock debris when the cry of “slaaaaaang” resulted in a frantic and wholly undignified scramble past and through the karee and wag-’n-bietjie bushes on the dam wall to inform what we at the time considered to be a responsible adult, Oom Koot (my father’s older brother). He arrived first but unfortunately unarmed. Characteristically unflustered in the way that distinguished him from our father, he kept an eye on the snake while the 12-gauge shotgun was being fetched from I think Martiens Barnard or a neighbour further down that road. In the re-telling, Oom Koot was blowing pipe smoke at the snake—presumably to keep it enthralled while awaiting its demise.
From that point my recollection roughly concurs with Gerda’s.
Klasie, 8 years old. Sketch by my school friend Erna Schutte, now Buber-deVilliers Schutte, during a visit to our farm in about 1961.
If we counted halves, there would have been 19 ½ whole ones. No, there were 39 little ones. Your description of the rocks where the snake was shot sounds odd to me. The largest rock was drilled and blasted with dynamite, why and what for I don’t know.
Boshoff’s self-portrait, Boetman, 2000. “Boetman” is an Afrikaans nickname often given to a younger brother in the family. It is both loving and patronizing in the same way that one tells a three-year-old who has successfully used the potty, “You are such a big boy.” The title refers to a 2000 open letter titled “Boetman is die bliksem in,” (“Boetman Is Pissed off His Ass”) from journalist Chris Louw to Willem De Klerk, a National Party opinion-maker and brother of former president FW de Klerk, in which Louw accused the older generation of Afrikaner leaders of political cowardice and deceit by sending Louw’s generation to the border war to defend Apartheid.
Boshoff (who had not yet been born by the time of the snake incident), 9-27-13:
This is history and because it’s history, I know best. I cannot recall the incident at all, but I have heard the story repeatedly from several different observers. Accordingly, I have the advantage that my personal observations are not influencing the objectivity of others.
There were 39 snakes. Pa himself shot the snake with his .22 pistol.
Boshoff, I am happy that your objective history has now placed a firearm in our own Pa’s hands, albeit one with a short barrel. What is history if not patriarchal?
Photo, Pamela Balluck
Part III: Why can I still write, and are there any other dementia sufferers who similarly lose their abilities in one area of their life while retaining it in another?
(Summary) I am not the only person who appears to be “faking”! Peer-reviewed neurological research confirms that patients in the early stages of dementia experience an uneven deterioration of different skills and that some demonstrate the “unexpected preservation of a cognitive function.” I found interesting case studies of such individuals, but I will skip them in favor of a generalized conclusion about why I can still write.
From my book:
Conclusion: So, it seems that dementia can sometimes go like this: persons having spent a lifetime mastering particular knowledge structures and intellectual skills may retain access to this expertise even after becoming utterly dependent in daily activities. I want to believe this will be my story, too. But in truth writing is getting slower and harder: my book took three and a half years of many eight-hour days, reams of notes, endless thesaurus-mining, scissors-and-tape cutting and pasting to figure out how a single comprehensive piece might come together, and the tough-love edits of writer friends Shen Christenson and Kirstin Scott.
Dementia can also go like this: a person having spent a lifetime mastering particular knowledge structures and intellectual skills—a well-educated person, in other words—may for a while use a “greater ‘thinking power’” to compensate for the disease in its early stage. However, research done at the Albert Einstein College of Medicine of Yeshiva University shows that once university graduates’ dementia becomes evident, they “suffer a memory decline that is fifty percent faster than someone with a minimal education.”
Given that my memory already has a record as long as my proverbial arm, how can I possibly vouch for the truth of the stories I tell? Truth is, I can’t.
If you know that you will get things wrong, why, then, write in the memoir format, a genre in which writers are always in danger of being accused of “nudging” the truth, making things up or—Oprah forbid—completely fictionalizing?
I write memoir for selfish reasons: it is a way to flesh out my shrinking self with former selves.
I write to remember, to inhabit, for a while, my earliest self. Unlike the spoiler snake of the Bible, the Snake with a capital S from my childhood is not an instrument of banishment from paradise, but rather a means of re-entry into the wonderland within my family’s encirclement of mountains that I greedily made mine, the recovery of the wondertime that I grasped in my two-fisted clutch and pressed to my heart.
I write to admit, from my crone’s nest atop the “strange Country” with “all Things new, and unknown about” in which I am growing old, that the more the world around me confuses me, the better it feels to escape to that patch of earth, “deep, rich, moist and black,” where my desires are still “bounded by the mountains, and if they ever stray, it’s only to contemplate the beauty of the heavens, the steps by which the soul is shown the way to its first dwelling place.”
I write to internalize a Law of Nature, a fiat not subject to human understanding or memory, a truth I intuited as a child witnessing wriggly life without number turn to thirty-nine unmoving columns of death, a truth I assimilated intellectually as a young woman studying quantum physics, a truth I must now embrace with my fate-battered psyche: time’s arrow points only one way—forward.
I write to embrace my place in the cycle of the generations. My body, my brain, my cells—all subject to the Second Law of Thermodynamics: the entropy, or disorder, of this my closed system always increases, until its parts no longer cohere and again return to the elements that birthed them.
Deep, rich, moist and black.
I write, in other words, so I won’t die of Truth.
Gerda, Peter, Joel, and Jennifer after the reading